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Mythical 24/7 Carers? - Page 2 - Carers UK Forum

Mythical 24/7 Carers?

Share information, support and advice on all aspects of caring.
103 posts
Good advance planning is vital, and retaining your own autonomy and free will are vital, even if your relatives are 100% fit and well.
I would never take on a caring role for someone without having a Power Of Attorney in place for example, because I wouldnt enter into an open-ended non-negotiable committment without having some way of passing on the care when the burden became too much. All the members of my family, me included, already have Powers of Attorney, just in case one of us gets run over by a bus and ends up in a coma for years. Its as important - maybe more so - than a will.
But what happens when the circle of support fails?We were supposed to have this support for Ben,but it has failed many times. Ben has ended up coming to his Dad's hospital appointments, as that has been my assigned duties for the day, because his support has not turned up due to illness or even to "prior commitments".
Ben belonged to a circles of friendship group, where the responsible person organised a get together for all of Ben's acquaintances, at our home. I ended up doing all the refreshments,plus the invitations and even being the host on the day, as the organiser phoned at the last minute to say she could not make it, she had another commitment. She has let Ben down countless times, and I know several other families in the county who say the same. (this was through the Learning Disability team in Social Services.)
Ben does more when he is at home with us. My husband has been out with a visual impairment group doing all sorts of things, and Ben is able to go with them.He LOVES it. Plenty of men to talk about football, plus he gets to drive a landrover off-road, and as for metal detecting,well he enjoys it so much, he now has his own metal detector.He always takes his RSPB book and his binoculars when we go for walks, and tracks birds and animals, and teaches us what to look out for.
There is nobody else to support Ben, or to understand that even while he is doing this he needs reminding constantly to test his blood, and take insulin or extra carbohydrate if necessary.I am aware that the care is able to be shared a little,(with my husband and daughter)so I am more fortunate than some. I am also very aware that Ben's personality is very optimistic,which keeps us all cheerful.
I have tried independent sources for support, but everywhere states we have to go through the Learning Disability team.It seems nothing can be achieved in Pembrokeshire for a person with learning disability, without the approval of Social Services.
Thats the way forward, not taking on the burden on one carer. And nearly all the parents I know do exactly that - we are used to sharing with others from the early years of attending nursery and school, where we fight for our kids to be included in the mainstream or to get specialist services if required.
Even Excalibur says he has had to fight.I have had 25 years of fighting, and I am not really a fighting sort of a person. I hate fighting, I don't want to fight.It takes too much energy, on top of the caring.

(I do need to put in here, that the only time that I have felt confident with Ben's support since he has been an adult, was when he had a support worker with a teenage diabetic daughter. So if we could get a support worker who had experience of living with type 1 diabetes, then it may be a possibility to have support for Ben).
What specialist services are you referring to?
I don't want my son in mainstream because they could not teach nor even manage him, they all but totally ignored my higher functioning son and anyway as I understand it inclusion does have to work both ways, not the automatic right many think it is, ie the child must not cause the rest of the class to lose their education, may not be applicable to your son but would be a certainty with mine should I have wanted mainstream, which I don't.
Sorry to go off topic but as it was mentioned I wanted to ask and reply.
I would insist it is possible to give full time care of good quality although not in all circumstances, nothing is across the board. The parents here where I live talk of nothing else but respite, no one is getting anywhere near as much as they want but generally if you ask for something else like an education or decent health care you are more likely to get more respite. Image
Vicky
Specialist services are very diverse according to need; special schools may be appropriate for some children who cannot settle in mainstream or have their needs provided adequately. Maybe specialist residential colleges, supported living etc for some.

I usually stick with mainstream activities, actually my lad is down at the summer holidays regular activity youth club at our local Com-Ed centre this afternoon, its a generic resource for 12-16 yr olds and he knows quite a few of the kids there. I got a phone call shortly after dropping him off thi afternoon saying he had left and was last seen heading in the direction of the town centre, so I had to go back, pick him up, and drop him back there with a minor telling off - it'll take him a wee while to get used to it, and them to him, but persistence pays off. But I'm not having him just sleeping late and hanging around the house all day moping all holidays, he needs to learn to socialise and do something constructive. He's old enough - 16 this week - to be trusted to walk home across town on familiar streets and routes by himself but I still have to stay very alert to the possibilities, and also to organise his time. I'm increasing his independence bit by bit, leaving him in the house for the odd hour by himself so he gets used to the idea, that kind of thing. Not that I'm not aware of the risks, but the risks to him of his becoming completely dependent are far worse. Like any other child, its a matter of fine judgement and good timing, isnt it?
Absolutely, if it can be done but then for me that would be comparing oranges and apples because of the different nature of the disability as well as the degree of LD involved.
My older son has some independent skills but the nature of autism means no matter how much I have set up social situations, or enrolled in clubs etc it all ends in tears and I sometimes wonder if I am not just making a bad situation worse! Youngest needs lifelong care 24/7 the whole shebang.
That's why carers are not generic either family or paid, the role is just too diverse, we had an unhappy incident at a holiday club a few years back with carers but the worst yet was a respite worker sent from SS who told me "There was nothing wrong with my children if I would only believe in God" and when we tried the local respite centre I could hear my sons screams from the car park! I prefer to go it alone.
Vicky
I have no idea how I would cope with that scenario - but I found this book very inspirational:
The Horse Boy: A Father's Miraculous Journey to Heal His Son' is published by Viking at £12.99.
http://www.telegraph.co.uk/earth/outdoo ... utism.html
I think that Douglas hit the nail on the head. Even when you're supposedly having a few minutes 'to yourself', napping or reading or drawing or whatever ....... you are still at the beck and call of your caree. Doesn't matter how mucky I am in the garden or with the engines or whatever, if hubby gets a little thunderfly land on his head .... well I have to stop what I'm doing immediately and jump up to pick it off or brush it away. He can't do it. And if I don't, it'll keep irritating him and then he'll start jumping and then he'll have to be re-positioned in the chair anyway, cos he'd have probably jumped and slid down the cushion.
He can't scratch his nose or brush flies away ...................

We are always on 'stand-by' for the slightest things. ALWAYS, ALWAYS, ALWAYS.

We have no FREE TIME, even if we go out, it only needs the phone to ring and we're straight back home.
That's what I call 24/7 caring. Not just the hands on stuff.

Image Image Image
We have had the "discussion" about Work Vs Care,ratio,hours,how much is too much,etc.all that,and more,yes all covered in threads long gone.

It is a matter,i see that now,having been weryed by such debates.that evokes much interest,when raised,and polerises opinion,Ive found,But,in the end,what we come to is simply this,in my view.

It seems to me:

There are,in essence two schools of thought,those who see it as impossible to both be a carer,and a worker,For those who hold this view,how people who work and care too,is a matter that no explanation will satisfy.

The other school of thought comes from those,like me,who do,in-fact,BOTH deliver care and go out to work too,and for us,who do it,no explanation is required,we do it,thus.

think that sums-up all the debates,boiled-down,its simple stuff.people do what they can as best they can.to the best of thier ability.Niether school of thought is right or wrong,for,as I see it,there is no "right" or "wrong".There are livers,the lives we all lead along with our loved ones.We all do the best we can for them,for ourselves too.
Vicky
We also had a religious nutter employee from the social work department. He was supposed to be out to give Robert a shower but he was a mormon and was trying to tell son that if he only had faith he could get out of the wheelchair and walk. Stupid ar**hole! Image What was worse was Robert used to wind him up and argue with him regarding evolution etc and we were like just get on with the shower and get out and give us peace!

Eun
it's ok saying about sharing the caring load between family, neighbours etc yes in a ideally world that would be great where as in reality neighbours dont want to work all day and then come home and then do some caring for a neighbour. also some just dont get any support from social services or family for alot of differant reasons. none of us know how the other carers needs are or just how hard it is for another carer. the only way to really know how it is for another carer is to do there care roll.
103 posts